awieleba
Very helpful member
- Joined
- Apr 28, 2008
- Messages
- 1,023
- Country
- US
- State
- michigan
- City
- oakland twp
Hello~
I have been debating about posting an update or not. I dont have a high comfort level about it. I have had people pm me or ask how my appt went. I also, know how it feels to be un diagnosed and wonder what ever happen to those that had simliar sx and have not posted in a year and how they are doing. I dont want to be insensitive to any pals either. But, I decided to post an update for anyone that knows my story over the last 2+ yrs OR a new person who is un diagnosed and fearful.
Some know my sx started over 2 yrs ago. Quick recap for new people: They are like what everyone has, twitching all over and including tongue sometimes, hoarse voice, weakness, muscle thinning & atrophy(most recent visit confirmed I do have atrophy of calf), cant work out anymore (but use to play tennis 2 hrs a day 4x a week), myoclonus (legs and arms and wrist, hand anything just jerking all around), tremor, stiff thumb and index fingers, muscle pain and achy cramp feeling in hands and feet, lost a shoe size, jello legs and arms tire out while lifting them or mixing pancake batter. I could go on but you get the drift. It seems I have everything at one time or another someone posts about. Other than anything physical I do fine around the house and with kids and getting out, so cant complain.
I went to the Als/mda clinic at teaching hospital and saw the professor of neurology there and she heads the als clinic. I started going in start of 08, and other than brisk reflexes, slight jaw jerk, couldnt move toes up and essential tremor the clinical and emg was clean. I went again in start of 09 as things never got better but slowly worse. Another clean emg/ncv and clinical was basically the same as 08. I was told no als. I really felt I would move on and get this out of my head and did for a long time. At the end of this year(09) things were getting bad, The sx that wax and waned were now with me everyday and I was getting new twitches and myoclonus and noted a new atrophy spot on my front shin area. From hands to elbow and feet to knee it was bad with weakness and stiff feeling. Also a dent showing up on forearm now. I was really stressed and made an appt for last week, it had been one year and I was on the 'wait and see' mode, so I wanted to see. I felt 100% that something would show or develop because I felt so worse. And, this doc has seen me from the start and would see any real changes.
Last Friday I had a 4 limb emg/ncv and it was clean. They did both shoulders, biceps, forearms, and fdi's. They did both thighs, inner thigh, 2 spots on calf. I asked for them to my back as my back is in pain a lot and they said NO, that with NOT one abnormality in any of the 4 limbs that the back would not show anything. My clinical was the same, knee reflexes still slightly brisk at 2+ but symmetrical and arms were normal. I have not in these 2+ yrs developed babinski or hoffmans. Clinically no weakness. So, this is good news. She said the dent on my forearm is not where a muscle would atrophy, it is spot where mixed connective tissue and ligaments are, the same for the outer ankle dent? I guess, but still a dent. Plus, again she emg'd that forearm. Same with fdi muscle, that is a lot thinner on me but still clean. The only spot she said yes to atrophy was on my front inner shin area. She did the emg on it and it was clean and I can do heel and toe walk on it. She said that I have lost muscle in my calfs and she has seen in men not a women (in her practice) with a sort of benign calf atrophy that does that and then stops, lets hope so. I do know that since the neuro identified it as atrophy and emg'd and not one issue that it really cant be due to als. I asked about myopthy and she felt the emg did not show that and I had a muscle biopsy done last summer that she said she personally reviewed with entire neurology dept and it was fine. So, she really had no real direction for me as far as nuero/muscle disease. She also told me that when a muscle changes shape but is still strong as far as functioning and clean emg then they dont (or her) worry about it. So, if she is not then I guess I should not?!
So, not sure where that leaves me. I will try my rheumy again and see what happens there. If I Find out what I have or what could be going on, I will post it for other un diagnosed that have these odd sx that seem similar to mnd. My husband said on the way home that this may be a new body for me and we may not get answers or I may not get better but I am blessed to be as functional as I am. He is right, and I do notice that when I push myself my sx get worse so I need to learn to listen to my body.
I pray for every single pal/caregiver on this site, truly courageous. I have learned a lot about the human spirit. I dont post a lot anymore but over the last 2 yrs from reading these forums I have begun to care for those that I have never met, cry deep tears for those suffering, laugh at wonderful personalities, and felt inspired by these journeys. I find I want to check in and read how you are all doing.....I am not sure how to close this. Most things such as 'take care' or 'blessings' seem trivial in light of the matter.
April
I have been debating about posting an update or not. I dont have a high comfort level about it. I have had people pm me or ask how my appt went. I also, know how it feels to be un diagnosed and wonder what ever happen to those that had simliar sx and have not posted in a year and how they are doing. I dont want to be insensitive to any pals either. But, I decided to post an update for anyone that knows my story over the last 2+ yrs OR a new person who is un diagnosed and fearful.
Some know my sx started over 2 yrs ago. Quick recap for new people: They are like what everyone has, twitching all over and including tongue sometimes, hoarse voice, weakness, muscle thinning & atrophy(most recent visit confirmed I do have atrophy of calf), cant work out anymore (but use to play tennis 2 hrs a day 4x a week), myoclonus (legs and arms and wrist, hand anything just jerking all around), tremor, stiff thumb and index fingers, muscle pain and achy cramp feeling in hands and feet, lost a shoe size, jello legs and arms tire out while lifting them or mixing pancake batter. I could go on but you get the drift. It seems I have everything at one time or another someone posts about. Other than anything physical I do fine around the house and with kids and getting out, so cant complain.
I went to the Als/mda clinic at teaching hospital and saw the professor of neurology there and she heads the als clinic. I started going in start of 08, and other than brisk reflexes, slight jaw jerk, couldnt move toes up and essential tremor the clinical and emg was clean. I went again in start of 09 as things never got better but slowly worse. Another clean emg/ncv and clinical was basically the same as 08. I was told no als. I really felt I would move on and get this out of my head and did for a long time. At the end of this year(09) things were getting bad, The sx that wax and waned were now with me everyday and I was getting new twitches and myoclonus and noted a new atrophy spot on my front shin area. From hands to elbow and feet to knee it was bad with weakness and stiff feeling. Also a dent showing up on forearm now. I was really stressed and made an appt for last week, it had been one year and I was on the 'wait and see' mode, so I wanted to see. I felt 100% that something would show or develop because I felt so worse. And, this doc has seen me from the start and would see any real changes.
Last Friday I had a 4 limb emg/ncv and it was clean. They did both shoulders, biceps, forearms, and fdi's. They did both thighs, inner thigh, 2 spots on calf. I asked for them to my back as my back is in pain a lot and they said NO, that with NOT one abnormality in any of the 4 limbs that the back would not show anything. My clinical was the same, knee reflexes still slightly brisk at 2+ but symmetrical and arms were normal. I have not in these 2+ yrs developed babinski or hoffmans. Clinically no weakness. So, this is good news. She said the dent on my forearm is not where a muscle would atrophy, it is spot where mixed connective tissue and ligaments are, the same for the outer ankle dent? I guess, but still a dent. Plus, again she emg'd that forearm. Same with fdi muscle, that is a lot thinner on me but still clean. The only spot she said yes to atrophy was on my front inner shin area. She did the emg on it and it was clean and I can do heel and toe walk on it. She said that I have lost muscle in my calfs and she has seen in men not a women (in her practice) with a sort of benign calf atrophy that does that and then stops, lets hope so. I do know that since the neuro identified it as atrophy and emg'd and not one issue that it really cant be due to als. I asked about myopthy and she felt the emg did not show that and I had a muscle biopsy done last summer that she said she personally reviewed with entire neurology dept and it was fine. So, she really had no real direction for me as far as nuero/muscle disease. She also told me that when a muscle changes shape but is still strong as far as functioning and clean emg then they dont (or her) worry about it. So, if she is not then I guess I should not?!
So, not sure where that leaves me. I will try my rheumy again and see what happens there. If I Find out what I have or what could be going on, I will post it for other un diagnosed that have these odd sx that seem similar to mnd. My husband said on the way home that this may be a new body for me and we may not get answers or I may not get better but I am blessed to be as functional as I am. He is right, and I do notice that when I push myself my sx get worse so I need to learn to listen to my body.
I pray for every single pal/caregiver on this site, truly courageous. I have learned a lot about the human spirit. I dont post a lot anymore but over the last 2 yrs from reading these forums I have begun to care for those that I have never met, cry deep tears for those suffering, laugh at wonderful personalities, and felt inspired by these journeys. I find I want to check in and read how you are all doing.....I am not sure how to close this. Most things such as 'take care' or 'blessings' seem trivial in light of the matter.
April
